There’s a brief moment in time, not long after you’re diagnosed with a chronic illness that you think your life is over.
All you had to judge your worth and your success in life was your experiences and goals so far, and the idea that you’re now flawed or broken somehow is just heartbreaking.
That’s not at all true of course and the first and hardest lesson in chronic illness is acceptance of your illness – the idea that it’s here to stay and no matter how hard this idea is to live with, you have to keep going with this new handicap.
Today I want to tell you the story of how I’ve successfully figured out the new limits of of my body, by taking up an old passion: cycling.
One important note
If you had told me four years ago that I would be able to cycle again I would have laughed at you. If you had told me two years ago I’d be cycling up to 50 miles a week I would think you were being deliberately cruel.
This fact is very important. I’m not telling you this story because I think everyone with endometriosis can cycle, I’m telling you this because I can cycle with endometriosis. I know this idea would have been a huge source of inspiration to newly diagnosed me, still reeling with this new, horrible pain that stopped me from even wanting to move.
This site is called endohope for a reason and I want to give each of you a small dose of hope today.
Finding my wheels
Prior to becoming ill I thought electric bicycles were a bit of a gimmick. As some of you reading this probably do. This quickly changed when I became ill. Getting endometriosis ripped out the ground from underneath me, and suddenly doing something like cycling was a total aspiration. Something completely out of bounds.
I read a book called Illness by Havi Carel and one of the things that struck me about Havi’s story was how she was able to cycle with a degenerative lung disease that only gave her a prognosis of about ten years. Havi often had to be on oxygen to help her struggling lungs and she had found an electric bike a complete revelation. And I thought if someone as poorly as her can cycle regularly, then what excuse have I got?
I’ve subsequently met many amazing women with endometriosis who take part in marathons, who walk and run to raise money for endometriosis awareness and treatment. I still don’t think I could do that (I still find walking on bad days extremely uncomfortable and painful) but these two facts stuck in my mind and gave me the courage to find an electric bike as soon as I could and give it a go.
Why not a normal bike you ask? Well while I’ve every confidence knowing what I know now that I could probably start to manage with a normal bike on the flat, I live in a very hilly part of the Cotswolds. It would be extremely difficult for me to cycle around here without some sort of assistance, and causing myself pain in the pursuit of trying to feel better rather defeats the point!
My first experience back in the saddle was a little wobbly, a little rusty, but I was hooked, the movement of the bike was smooth, the assist on the pedalling I was doing was exciting and (whilst trying not to get too excited) I realised I wasn’t in any pain.
It was a short, ten minute test drive on the flat, and later on I was in agony for the next eight hours as my insides roared, but an idea had gripped me. The saddle that time was a little high, I had to stretch to the pedals a little that day. Nothing with endometriosis is simple, I expected my body to fight this, I had prepared for the pain and so it was easier to endure.
Don’t underestimate the power of excitement
I was a little more nervous the next time I tried cycling. I had asked for a week long demo to give me time to relax and not rush and get an idea of the payback of pain. My aim was to cycle a mile – part of the way of an old route I did every other day as a child. This time someone would come with me to help me get the bikes back if I couldn’t manage.
The bike had been properly adjusted for my height, the handlebars helped me keep a straight back, I could reach everything I needed comfortably and easily. Reassured by these plans we set off.
I cycled ten miles that day. Hills and all.
There’s something really calming about cycling, part of why it’s so powerful even for those who are well, as I grew more confident during that ride, I relaxed. My mind cleared and my illness floated away. This is the feeling that calls me back to cycling, despite all the pain that I feel walking around cycling is calm and pain-free, smooth and gentle. It’s as close as I get to feeling normal.
When I cycle I am normal. I’m human again.
The speed of the bike is exhilarating, and it’s different to driving something else because it has a more powerful idea behind it – the idea that my tired body is doing something right.
The electric motor only helps me when I pedal, and only then up to a certain speed. (Which I can now excitedly fly past all on my own). I experimented with the most assistance and the least, comforted by the fact that I only needed the bike’s help on the steep hills surrounding my home.
As I got home that afternoon my thighs began to ache terribly and my lungs burned. This was when I started to become emotional. Years of being sedate had robbed me of these feelings, pain with meaning – pain from effort and activity. Just a normal response from my body for once. I almost wept with joy.
I find cycling extremely liberating. I’ve gotten to grips with when to cycle to not cause me anymore pain, and I’ve even figured out when I can cycle when in pain to relieve it. It’s slowly becoming my main mode of transport. I can cycle to the shops or visit friends. I can elope with my bike in the mornings for some inner calm, and I can excitedly report that I now cycle to work despite pain every single day.
I might even buy a normal road bike one day.
Fear of the pain often holds us back – and for good reason. If you find yourself thinking “I could never do that again” I encourage you not to lose hope, there might be a way you can build your body up slowly to return to something that you enjoyed one day, even if it feels impossible and far away now.
Enjoying something passionately always helps, you just need to find out what that passion is.
Getting a feeling of strength back in my body is invigorating. Slowly seeing my fitness improve is astounding me. All because I took a calculated chance to do something positive despite my illness, to give me an escape from it.
Because of that decision and the goals it has inspired, the world feels a little bit limitless again.